It is estimated around half a million people in the UK could be living with undiagnosed coeliac disease according to a national charity.
During this week’s Coeliac Awareness Week, the charity Coeliac UK is launching a campaign to help identify those suffering from the disease.
One mum who knows all about the difficulties of diagnosing coeliac disease is Kate Hardy whose middle son, William, was diagnosed with the disease at 18 months old.
Kate and her husband Jamie, who live in Pudsey with their three children Evie aged seven, William aged 6 and Ben aged 3, said she knew there was something wrong with William when he was 14 months old.
“He was sick once a day for 76 days and it seemed so random as there was no illness connected to it,” Kate explained.
“At first I thought it must be viral but when it kept reccuring I knew it was something more.
Kate took William to her GP but said she had to be persistant to get the tests he needed.
“It wasn’t just the sickness, his tummy was distended and tight like a drum, he couldn’t sleep and we would spend hours driving around the Yorkshire Dales to get him to drop off,” she said.
Kate’s persistence paid off and in four months they had a diagnosis of Coeliac Disease, an illness Kate admits at the time, she had never heard of.
“It was a bit of a shock when we found out and we did some research on the internet and no other members of the family is affected.”
Coeliac disease is an autoimmune disease which means the immune system mistakenly attacks healthy tissue in the body.
In coeliacs it mistakes substances found inside gluten as a threat to the body and attacks them, damaging the surface of the small intestines and disrupting the body’s ability to absorb nutrients from food.
There is no cure and a strict gluten free diet is the only way to control it.
Kate said the diagnosis meant making some big family decisions and them all adopting the gluten free diet. “To begin with a supermarket shop would take forever as I was scrutinising the packaging on everything, but as you go along you get better at it.
A designer by profession and a passionate cook, Kate has even created a cookbook to help other families facing the same difficulties preparing meals.
“Coeliac disease is black and white, there are no grey areas, nothing is going to change as time goes on so we have to get on with it.
“When we first got William’s diagnosis there were not many books out there for family meals or lunchboxes and that inspired me to write the book.”
Can I Eat It? is downloadable from amazon.co.uk
The facts about coeliac disease
According to a YouGov survey commissioned by Coeliac UK, 23 per cent of British adults recalled being told they were anaemic.
Anaemia is experienced in up to 50 per cent of patients with coeliac disease at diagnosis.
Many of those with anaemia may have undiagnosed coeliac disease.
Coeliac UK has an online assessment which allows people to check symptoms and advises if they need to see a GP.
Find out more at isitcoeliacdisease.org.uk